Dr. Paul Wicks, head of innovation at PatientsLikeMe, detailed for Applied Clinical Trials the three services the company announced at DIA, Trial Access, Community Access, and Access Services. According to Wicks, part of the way PatientsLikeMe works is to offer replicable, repeatable services that will inform decision-making for multiple stakeholders in healthcare—with the patients experience and outcomes at the center of these decisions.
The Trial Access service offered by PatientsLikeMe offers a way for pharma to develop a patient-centric protocol by listening to patients systematically to inform protocol design, said Wicks. “We offer a compelling service to overcome the inertia of not listening to patients. We want to make it so easy they can’t NOT listen to them.” On PatientsLikeMe side, patients can be “plugged in” at every step of the protocol development.
The pharmaceutical company can then deploy custom research programs that gather meaningful data and feedback on the design of their clinical trials. Trial Access also includes review of an expanding repository of patient opinions and attitudes about participating in clinical trials. Once the trial protocol is finalized, companies can run outreach and referral programs to raise awareness and recruit for their trial among PatientsLikeMe’s members, which currently hovers at 250,000 with 2,000 diseases.
Community Access, which is not specific to clinical trials, pairs researchers with PatientsLikeMe scientists and patient engagement experts to build open, online registries for research to gain insights from patient-reported data that can be shared across the organization. One example Wicks shared came from Boehringer Ingelheim’s use of the PatientsLikeMe database in the area of idiopathic pulmonary fibrosis, so that BI could develop important information for patients based on data representative of the group.
Access Services allows companies to quickly collect and analyze real-world data to generate statistically robust and scientifically credible patient outcome research, and determine the impact of new wearable and consumer-oriented health devices and sensors on clinical development and commercialization. The goal, said Wicks, is to provide objective data on the wearables that could inform trial design, as well as increase data for payers. Wicks also noted the company would be releasing its own data on wearables later this year.
In five years, Wicks hopes that accurate data is informing a new learning healthcare system, which features the patients voice in the middle. When the outcomes of patients are improved, and decisions are made easier by learning from others experiences, then the learning healthcare system will be in place.